Disappointing update on Tymlos

Oops, made a typo. T-score for hip is -2.2, a drop worse than last year’s -2.1.

Same facility, not sure if same machine.

I'm sorry to hear that your results weren't better. Most of the BMD gains from Tymlos occur in the first year of treatment.

While your BMD may not have changed much in the second year, remember that Tymlos was evaluated on the basis of preventing new fractures. The reduction in new vertebral fractures is where Tymlos really shines.

Here's a page showing Tymlos efficacy in terms of BMD and fracture reduction over the treatment period. Also note that the treatment period that was evaluated is 18 months while real-life treatment periods are 24 months.
https://tymlos.com/hcp/efficacy-safety/

Just a concern, have you seen a good endocrinologist who has checked for any diseases or conditions that might cause osteoporosis?
This includes: endocrine disorders (hyperthyroidism, diabetes, Cushing's), inflammatory diseases (rheumatoid arthritis, IBD), and malabsorption issues (celiac disease). Other key drivers include chronic kidney or liver disease, cancer, and malnutrition/eating disorders, etc. etc.

Seems like over and over again, when posters are unable to make gains on resulting treatments it is frequently because there is an underlying disease that needs to be treated.
Then when that disease is treated the osteoporosis which was just a side effect of the disease becomes less or a non issue. Usually this is good news for most people.

@kathleen1314 this is spot on. Endo and/or rheumatologist can help on determining underlying causes.

@kathleen1314

Thank you for your suggestion. I do see an endocrinologist and, of course, various other physicians on a regular basis.

Through tests, I know my thyroid, glucose level, and kidney and liver function are normal. Having a history of IBS, which mercifully seems to have cured itself nearly thirty years, I am quite sure that if I had IBD I’d know it.

As for cancer, I believe it’s breast and gynecological cancers that most affect the efficacy of osteoporosis treatments. I still get mammograms yearly and , having had a hysterectomy 25/years ago (which probably accelerated my developing osteoporosis), I am a no risk of gynecological cancers.

I think I was just unlucky. I’m seeing my endocrinologist next week to plan next steps, and we’ll see what she has to say.

Thank you again for your reply.

Im sorry to hear of your second year decline on tymlos. You do not mention what your bone markers were at these times which may help you find your answer. Tymlos tends to be more aggressive in activating osteoclasts (bone breakdown cells) in the second year ( this is sometimes evaluated on the bone marker - CTX ) Also on both Forteo and tymlos, coritcal bone can suffer ( increase prosoity) sometimes greatly. Hip has alot of coritcal bone and wrist and feet are primarily cortical bone. SPine is primarily trabecular bone.
There are different reasons for all of this and I advise you to read Great BOnes by Dr MecCormick so you can begin to try to sort through this.. educate yourself
I too had a significant decline in cortical bone in the second year of tymlos. I then transitioned to Evenity, althoug I had to fight for it ( Evenity better for cortical bone) and am doing well. However I had done alot of work to get my diet and system as healhty as possible prior ( did all the tests for thyroid, inflammation, homoscysteine, gut issues, growth hormone Igf-1 homrone, urine cal, vit D and boen markers etc. ) You may have to ask for some of these tests - if they were not done. The book will give you guidelines. Sending postive energy for your healing.

@dmshope I’ve read Dr McC’s book on back pain and found it only minimally useful. I’ll take a look at this one and hope it has more relevance to my situation.

Unfortunately, on the advice of my cardiologist, I won’t take Evenity (I have a mild arrhythmia called superventricular tachycardia, and I asked him specifically about Evenity before settling on Tymlos.

The only decent improvement I saw after two years on Tymlos was in the spine, which remains my biggest concern. I can’t take alendronate because it exacerbated my GERD (I believe even the new liquid form can cause that reaction), and I don’t want to take Reclast. So I suppose by default I’ll resume Prolia. Since I’m 79, I’ll assume I’ll just stay on it for the rest of my life and thus avoid the rebound issues.

@dmshope i forgot to say thank you for the detailed response. So here it is - thank you .

@oopsiedaisy I have read the study at the link and wonder if those impressive risk reductions hold for people with results like mine.

@kathleen1314
You are on the right track about underlying disorders. I am convinced my osteoporosis is the result of my chronic pancreatitis with considerable malabsorption. That was diagnosed nearly three years ago and it was so advanced that it was clear the CP had been a factor for quite some time. I take enzymes for that condition. The osteoporosis was just diagnosed this past summer and it too is quite advanced. So I personally am going the whole 9 yards with supplements, exercise, and Tymlos and my bone formation blood markers have already showed significant improvement. I’m counting on Tymlos to do its job and I’m doing everything else to support the medication. I don’t think it’s just one thing that would suffice for most of us. Many of us found out belatedly what we should have been doing over the years to prevent our bone loss. Never too late.